We are blessed to have a prolific raspberry patch about ten feet from our back door. Mixed in with the raspberries are quite a few "thornless" blackberries. I had thought these to be the same wild blackberries that are a noxious (though edible and delightful) weed in this area, but a friend who was visiting a week or so ago pointed out that mine do not have thorns, and therefore are not identical to their wild and reckless cousins which reach out to scratch across arms and wrists and knuckles with great abandon.
In the front yard, I have a line of "black raspberries" which resemble little thimbles to me when they twist easily from their core and are best when eaten in a bowl of cold milk and cereal. I like these tiny, tasty treasures better than the red raspberries (for cereal) and I think it is the sweet flavor of the cereal juxtaposed against the tartness of the little, black berries.
The berry patch in back gives forth its fruit by big bowl-fulls every night. The little black raspberries produce only half a cereal bowl-full every few nights.
I used to pick blueberries with my Dad, so berry pickin' always brings back fond memories of our time together in the rural backroads of New Hampshire. I'm sure that, as a gangly, skinny kid and as a busy teenager, I took my time with Dad for granted and did not deeply appreciate those special moments where a lot more than berry-pickin' was taking place.
Stories were being told, tales of Dad growin' up out on a farm. Ghost stories and funny experiences were interrupted by the appreciative "mmmmm's" and "that was a good one!" that burst from our blue mouths and blue teeth.
We had a tall blueberry bush out in the back field, that stood at least 8 ft. tall. It was thick from a multitude of stalks that grew up from the roots and one had to carefully reach way over the top branches to snag the perfect, delectable morsel of nature's fruit. We always had old lard cans which featured a bail, or swinging handle, over the top, and no one who has spent any time at all pickin' blueberries can forget the "ding" you'd hear when you first started dropping the berries into the can. Raspberries are much too soft to make a sound, and you treat raspberries differently than blueberries, anyway. They are tender and fragile and must be lifted using the lightest of touches from the bush to the bowl or can and placed, almost with reverence and love, into the group of delicious, juicy bits that have already made the sacrificial journey from bush to bowl.
I remember the stories and the telling, but not the exact day the stories were told. I just grew up with them, and probably heard the same one over and over. Maybe my Dad was like Jim, our old horseshoer years ago, who loved to tell jokes he'd garnered while traveling all over the county shoeing horses. Once, I remember he launched into a humorous tale, and I told him with a smile, "Jim, you told me that one already!"
And Jim replied, "That's okay. It's a good story and I want to hear it again too!"
I thought blueberries and Dads would last forever. My Dad made his trip to the other side in 1996, but just a few months before he died, he made an offhand comment that I never forgot.
He said, "There's not a day goes by that I don't think about my father."
He was 80 years old when he made that observation, and his father had died of a cerebral hemorrhage while he was out in the NH woods cutting firewood at least 40 years earlier.
It's been 14 years since I've seen Dad, and I know exactly what he meant. I'm guessing anyone reading this who has lost a dear Dad or Mom knows what he meant, too.
...AND Atlanto occipital dislocation (internal decapitation)...... Coping With Chronic Pain and A Sudden Change in my Way of Life
Wednesday, July 28, 2010
Sunday, July 18, 2010
Something to shout about!
Well, I'm just plumb excited!
With the autonomic dysreflexia, I can't let myself jump up and down and say YIPPEE, but that's what I feel like doing, so you can just imagine it.
My work comp has authorized me to get a power mobility scooter. The ones I've seen have been less of what I'd think I'd want or need, but I figured those were my options. But the wonderful fellow who runs the scooter store showed me a link to one called a "Wrangler."
Now, with a lifetime of wranglin' horses and cows and dudes, doesn't that sound like a rig that is meant for me to ride? You can see the photo I'm posting of it, above.
It's got 13" pneumatic tires and high clearance and rugged terrain tread.
It's got a high seat back with a head rest, which I simply have to have.
It'll go 10 mph, tho I doubt I'd do that. I used to be a risk-taker, but no more!
The batteries have a range of up to 20 miles!!
I can just see me tooling along somewhere in the beautiful woods, down an old logging road,
leading my dog alongside. I am starting to cry just thinking of the chance to be out in the woods again, on a quiet electric scooter!
tee hee! I even asked for "Viper Blue!" I guess I'll have to get a helmet for riding it...
yahoo!
Saturday, July 17, 2010
Our local parade
We live in a small town.
3500 people. Not a stop light in the whole county. Not a movie theater, either. We have to go to the next state to watch a movie. Really! Of course, we live just ten miles from the Oregon line, which is a huge river known as the Columbia.
Last weekend was Community Days here, and here are a few photos from the parade!
All the news that's fit to print
Early this week, the fellow came to have me try out a mobility scooter. When he arrived in a his Subaru wagon, I was surprised to see him heft out of the passenger seat up front the pieces of a small wheelchair! Chris is paraplegic and so cute he'd make a fine actor! He told me he is 39 and I told him, I was guessing you were 23! He said his wife just had twin boys 10 months ago, and he spoke during his time at our house of things he does outside of work, like boating and skiing.
I figured out that he is a motor-head, so I told my husband to show Chris his V-max motorcycle in the shop. We had a nice visit in the shade of the shop, next to the motorcycle and our "new" car and all of Pete's tools and such. Chris said he got his spinal cord injury when he was 14 and was in a car wreck. He understood so much of the things I was talking about, that usually folks don't "get." He asked me if I could do hippotherapy and I told him that I think being near the horses would be too hard for me emotionally. He said he understood that because he can't play wheelchair softball even though he was passionate about baseball when he was growing up...for the same reason.
I was fine with the scooter he brought, but asked for one with suspension, an obvious need for anyone with an upper-C-spine injury or broken neck. I'm thinking this will be something I could go down trails a-ways on....that once more I'll be able to see "what's around the corner."
I was always a "what's around the bend?" kinda gal....a drive that kept me out way too long on rides and causing me to come home late, thus resulting in worry for my family. What's around that corner? What does it LOOK like? what am I missing? Maybe this trail will end soon and I can feel like I saw all that I could this day?
So, I'm thinking perhaps I can use the scooter for a small bit of "bein' out in the woods" again, and also perhaps I can walk my dogs that way, though it would be a hassle to haul the thing down into town. Where we live, it's all pretty rough and hilly and on the road, there are no shoulders to walk down.
I had my six-month appointment with Dr. Fu, my oncologist. Something spoke to me that day, warning me that my tests were not going to come back "fine" this time. And so, I wasn't shocked when Dr. Fu said that my M-proteins had spiked. They've never spiked before, so in 6 months, they went from an undetectable level to 19.5 mg/24 hour urine. I don't know what that means. Dr. Fu said "You are still a long way from a myeloma diagnosis." But all multiple myeloma starts with MGUS (which is what I have, an anacronym for Monoclonal Gammopathy of Undetermined Significance." But not all MGUS ends with Multiple Myeloma. Most MGUS increases at a rate of 1% per year, though the ones that evolve into myeloma increase at a rate of 20% per year. How my stats, of increasing from nothing to 19.5 mg, fall into that ratio, I don't know. I'm not really worried about it. It is what it is, and if there is nothing else that my journey with my injury has taught me, it is that there is no use in worrying.
I am scheduled for another 24-urine and blood labs in six months to see if the spike leveled off or is continuing to climb.
My pain mgmt team at the cancer center is awesome! I am now taking an oxycontin (long-lasting oxycodone) in the AM and PM along with 4-5 oxycodone during the day for breakthrough pain. I'm taking nortriptyline at night, which helps with the pain in a tremendous way, and also helps me sleep.
I've had a lot of company, which I've really enjoyed this year. Tomorrow, a dear friend is coming to see me from her home in Oregon. I have not seen her in almost 4 years! She and I played together in a little bluegrass band in California when I lived there. The injury has taken away my ability to play music, but my friend still packs her guitars around in her trunk as she drives, ready in nan0-seconds for a jam session.
Did I tell you already that we have a fun project this summer? We bought, a couple of months ago, a 1969 camp trailer. What a project!! It's 41 years old and looks like it feels every one of those years! Well, I should say, "looked" because we've been working on it almost daily. Too much to describe, but it's been such a labor of love, and as I work, I think of us living in this trailer next year when we drive up to Alaska with the dogs, hopefully staying a couple of months this time.
It's an Aladdin "Casbah" (model) that is 16 ft. long, and has a full bath and shower in the back. I love everything about it! We bought it from the coastal part of Oregon and now, that was just plain stupid! Dry rot? Yes! Rusted everything, including every single staple in the lovely birch paneling? YES! I have taken off all the cabinet doors and Pete buffed up the hinges to get the rust off of them, and I have painted them all, along with the knobs and other hardware. I painted the doors, too....and put them all back on. We had to pull out pieces of the wall to remove the dry rot and put in new support beams and new paneling and such. We have painted the 4-burner stove black and the front of the nice, big fridge black, as well.
And anyone who knows me knows that I have already painted silhouettes of moose and bear on some of the cabinet doors. Oh, and pine trees, too!
I also am hoping we can pull it down to CA to see our son in a couple of months and park at the beach, and have him and his wife join us at times. I'd love that! Making campfires at night, making S'mores, and visiting and getting reacquainted with each other.
Our spring was nice and cool here and oh, how I loved that. Now, the days are heating up and the AC is cranking out the cool air. I'm so thankful for the AC! I've had alot of times "paying the fiddler" for the work I try to do in the garden, especially when people are coming for a visit and I want things to look as good as I can. Perhaps that is something I've learned this year, learned the hard way: that loved ones come to see us and not our flowers and don't even notice the weeds. Or if they do, they don't mention it. That is why we LOVE them!
God bless you, dear reader!
I figured out that he is a motor-head, so I told my husband to show Chris his V-max motorcycle in the shop. We had a nice visit in the shade of the shop, next to the motorcycle and our "new" car and all of Pete's tools and such. Chris said he got his spinal cord injury when he was 14 and was in a car wreck. He understood so much of the things I was talking about, that usually folks don't "get." He asked me if I could do hippotherapy and I told him that I think being near the horses would be too hard for me emotionally. He said he understood that because he can't play wheelchair softball even though he was passionate about baseball when he was growing up...for the same reason.
I was fine with the scooter he brought, but asked for one with suspension, an obvious need for anyone with an upper-C-spine injury or broken neck. I'm thinking this will be something I could go down trails a-ways on....that once more I'll be able to see "what's around the corner."
I was always a "what's around the bend?" kinda gal....a drive that kept me out way too long on rides and causing me to come home late, thus resulting in worry for my family. What's around that corner? What does it LOOK like? what am I missing? Maybe this trail will end soon and I can feel like I saw all that I could this day?
So, I'm thinking perhaps I can use the scooter for a small bit of "bein' out in the woods" again, and also perhaps I can walk my dogs that way, though it would be a hassle to haul the thing down into town. Where we live, it's all pretty rough and hilly and on the road, there are no shoulders to walk down.
I had my six-month appointment with Dr. Fu, my oncologist. Something spoke to me that day, warning me that my tests were not going to come back "fine" this time. And so, I wasn't shocked when Dr. Fu said that my M-proteins had spiked. They've never spiked before, so in 6 months, they went from an undetectable level to 19.5 mg/24 hour urine. I don't know what that means. Dr. Fu said "You are still a long way from a myeloma diagnosis." But all multiple myeloma starts with MGUS (which is what I have, an anacronym for Monoclonal Gammopathy of Undetermined Significance." But not all MGUS ends with Multiple Myeloma. Most MGUS increases at a rate of 1% per year, though the ones that evolve into myeloma increase at a rate of 20% per year. How my stats, of increasing from nothing to 19.5 mg, fall into that ratio, I don't know. I'm not really worried about it. It is what it is, and if there is nothing else that my journey with my injury has taught me, it is that there is no use in worrying.
I am scheduled for another 24-urine and blood labs in six months to see if the spike leveled off or is continuing to climb.
My pain mgmt team at the cancer center is awesome! I am now taking an oxycontin (long-lasting oxycodone) in the AM and PM along with 4-5 oxycodone during the day for breakthrough pain. I'm taking nortriptyline at night, which helps with the pain in a tremendous way, and also helps me sleep.
I've had a lot of company, which I've really enjoyed this year. Tomorrow, a dear friend is coming to see me from her home in Oregon. I have not seen her in almost 4 years! She and I played together in a little bluegrass band in California when I lived there. The injury has taken away my ability to play music, but my friend still packs her guitars around in her trunk as she drives, ready in nan0-seconds for a jam session.
Did I tell you already that we have a fun project this summer? We bought, a couple of months ago, a 1969 camp trailer. What a project!! It's 41 years old and looks like it feels every one of those years! Well, I should say, "looked" because we've been working on it almost daily. Too much to describe, but it's been such a labor of love, and as I work, I think of us living in this trailer next year when we drive up to Alaska with the dogs, hopefully staying a couple of months this time.
It's an Aladdin "Casbah" (model) that is 16 ft. long, and has a full bath and shower in the back. I love everything about it! We bought it from the coastal part of Oregon and now, that was just plain stupid! Dry rot? Yes! Rusted everything, including every single staple in the lovely birch paneling? YES! I have taken off all the cabinet doors and Pete buffed up the hinges to get the rust off of them, and I have painted them all, along with the knobs and other hardware. I painted the doors, too....and put them all back on. We had to pull out pieces of the wall to remove the dry rot and put in new support beams and new paneling and such. We have painted the 4-burner stove black and the front of the nice, big fridge black, as well.
And anyone who knows me knows that I have already painted silhouettes of moose and bear on some of the cabinet doors. Oh, and pine trees, too!
I also am hoping we can pull it down to CA to see our son in a couple of months and park at the beach, and have him and his wife join us at times. I'd love that! Making campfires at night, making S'mores, and visiting and getting reacquainted with each other.
Our spring was nice and cool here and oh, how I loved that. Now, the days are heating up and the AC is cranking out the cool air. I'm so thankful for the AC! I've had alot of times "paying the fiddler" for the work I try to do in the garden, especially when people are coming for a visit and I want things to look as good as I can. Perhaps that is something I've learned this year, learned the hard way: that loved ones come to see us and not our flowers and don't even notice the weeds. Or if they do, they don't mention it. That is why we LOVE them!
God bless you, dear reader!
Thursday, July 1, 2010
What I learned today...
at pain management.
It helps to write it down so I might remember later.
My wonderful pharmacist/co-pain-manager told me that I still need to rest. Even if I feel better because of the meds, I need to still lie down, get the weight of my head off my spine and rest.
He could tell that from my telling of the events of last week, that I am an over-doer (being a past over achiever and work-a-holic).
I had somehow thought that the meds would take the pain away and I could do more...get out and do more...achieve and accomplish more...do those things that produce those good ol' endorphins that naturally deal with the pain, though only for a moment and then the fiddler must be paid.
I learned that the things I so love to do are my enemies. I learned that those things I love to do cause my pain. Perhaps like a woman who is obsessed with a man who is no good for her, I need to learn to walk on the easy side of the street and avoid that fatal attraction.
And now, I've forgotten the other important things I learned in their office today. I'm sure it will come back to me later and I will add it to this post. I remember it was an epiphany, just as the one I just mentioned was.
It helps to write it down so I might remember later.
My wonderful pharmacist/co-pain-manager told me that I still need to rest. Even if I feel better because of the meds, I need to still lie down, get the weight of my head off my spine and rest.
He could tell that from my telling of the events of last week, that I am an over-doer (being a past over achiever and work-a-holic).
I had somehow thought that the meds would take the pain away and I could do more...get out and do more...achieve and accomplish more...do those things that produce those good ol' endorphins that naturally deal with the pain, though only for a moment and then the fiddler must be paid.
I learned that the things I so love to do are my enemies. I learned that those things I love to do cause my pain. Perhaps like a woman who is obsessed with a man who is no good for her, I need to learn to walk on the easy side of the street and avoid that fatal attraction.
And now, I've forgotten the other important things I learned in their office today. I'm sure it will come back to me later and I will add it to this post. I remember it was an epiphany, just as the one I just mentioned was.
Pain Management
Today I went to my new PM folks. They are simply wonderful.
As I've written before, I see a Physician's Assistant (PA) and a Pharmacist together each time we meet, and they ask me pointed questions which, in the end, make a world of sense to me. Nina and Eric are their names. Good folks.
I am now taking Oxycontin with oxycodone for breakthrough pain, along with nortriptyline at night for sleep (and controls the pain during the night). I also take 90 mg of Cymbalta.
I had a rough two weeks since the last time I'd seen them. I had a good visit with my mother (from NH) and my sister (from Hawaii), and then a very close friend from Maine came to visit, along with her husband.
I would have been okay and recovered from that, but I did a "number" on myself when someone locally wanted to trade his property for ours. I love where his property lies, in a pine forest with no lawn or flowerbeds to care for, only pine needles. Just what I need.
The yard here is too much for me to take care of. My husband mows the lawn, but I try to take care of the watering and light weeding. I love gardening, but it's truly too much for me. When I try to do some weeding, I lie down next to the flower bed and pull weeds that way sometimes.
So, I think having a yard in the middle of some pines would be just what I needed. That any energy or strength I might have could be used for some easy walking. And that's another thing, we don't have any easy walking here. The road is too busy, and it has no shoulder to walk on. And across the road is a great place to hike, as it leads down into a canyon and back up the other side, but all of that is beyond what I can do now.
Back to the other day and how it affected my pain level.
I weeded in the yard one whole day and I did housework for one day as I prepared the place to be seen by a potential "trader." The one night, I was up at 9:30 pm weeding!
My hands swelled up and were so weak and painful!
As it turned out, though the other guy did want to trade, we did not. We loved the land at his place but the house was a triple-wide manufactured home and that was simply too big for me to take care, vac the carpets, etc.
As I looked back, though, on the days I spent preparing to show our place, I realized that I was obsessed and was having a serious lack of good judgment when I worked so hard. The pain is still with me, though it lessens each day, as I pay the fiddler for overdoing.
I asked my husband to strongly tell me to stop working so hard if I ever go into that mode again. He said I've worked that way all of my life, which is true. But "no can do" anymore!
So, the pharmacist today decided that we should keep on with my meds and dosages the way they are for now, because it is hard to measure their failure or success when the last two weeks were not the "norm" for me. I thought that made good sense.
I began to cry big ol' juicy tears at the end of our session, just because they are so nice. So caring. I am so labile any more. I cry at anything, almost. And especially when I am around people who are sincerely kind to me.
As I've written before, I see a Physician's Assistant (PA) and a Pharmacist together each time we meet, and they ask me pointed questions which, in the end, make a world of sense to me. Nina and Eric are their names. Good folks.
I am now taking Oxycontin with oxycodone for breakthrough pain, along with nortriptyline at night for sleep (and controls the pain during the night). I also take 90 mg of Cymbalta.
I had a rough two weeks since the last time I'd seen them. I had a good visit with my mother (from NH) and my sister (from Hawaii), and then a very close friend from Maine came to visit, along with her husband.
I would have been okay and recovered from that, but I did a "number" on myself when someone locally wanted to trade his property for ours. I love where his property lies, in a pine forest with no lawn or flowerbeds to care for, only pine needles. Just what I need.
The yard here is too much for me to take care of. My husband mows the lawn, but I try to take care of the watering and light weeding. I love gardening, but it's truly too much for me. When I try to do some weeding, I lie down next to the flower bed and pull weeds that way sometimes.
So, I think having a yard in the middle of some pines would be just what I needed. That any energy or strength I might have could be used for some easy walking. And that's another thing, we don't have any easy walking here. The road is too busy, and it has no shoulder to walk on. And across the road is a great place to hike, as it leads down into a canyon and back up the other side, but all of that is beyond what I can do now.
Back to the other day and how it affected my pain level.
I weeded in the yard one whole day and I did housework for one day as I prepared the place to be seen by a potential "trader." The one night, I was up at 9:30 pm weeding!
My hands swelled up and were so weak and painful!
As it turned out, though the other guy did want to trade, we did not. We loved the land at his place but the house was a triple-wide manufactured home and that was simply too big for me to take care, vac the carpets, etc.
As I looked back, though, on the days I spent preparing to show our place, I realized that I was obsessed and was having a serious lack of good judgment when I worked so hard. The pain is still with me, though it lessens each day, as I pay the fiddler for overdoing.
I asked my husband to strongly tell me to stop working so hard if I ever go into that mode again. He said I've worked that way all of my life, which is true. But "no can do" anymore!
So, the pharmacist today decided that we should keep on with my meds and dosages the way they are for now, because it is hard to measure their failure or success when the last two weeks were not the "norm" for me. I thought that made good sense.
I began to cry big ol' juicy tears at the end of our session, just because they are so nice. So caring. I am so labile any more. I cry at anything, almost. And especially when I am around people who are sincerely kind to me.
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